Hello everyone

[crohnicaly stinky]

In 1993 I suddenly had pain in my gut and D and the only way to stop the pain was to have a movement, whcih worked for about an hour. After a year of this coming and going I went to a general practioner doctor who said I had Irritable BS and he prescribed the book "the seven habits of highly effective people" so I could find ways to reduce my stress. He also said there was no cure or treatment because it was mostly a mental condition. Well... no wonder I never went back to doctors for all those years.

About 6 years ago after noting how flares came with pollen season I got lucky googling and found out there are histamine receptors in the intenstines. So just for the heck of it I took Claritan the next time I got a flare. Unbelieveably this worked and within 3 days the D was gone. I would take them for a couple of months and then stop until I got another flare.

Then this year... Not sure why, near record pollen counts? The fact I had shoulder pains and started taking two advil along with my claritan? But this year the flare was bad. I could not get control of it. I lost a lot of wieght and felt as if I was about to die.

So I went to a GI doc and had a colonoscopy and the scope down esophogus, can't recall the term for that one. They did biopsies, I submitted stool samples and they took blood and now they claim I have crohns. I'm tapering off prednisone and actually I feel pretty good as of today.

I sinced fired my GI doctor, actualy she was ok it was just the nurse was so awful, maybe another post for that story. This thursday I'll see a new GI doctor. The old doctor had me lined up for Humira, but I'll see what the new one says.

I've read many posts in here. I feel lucky not to have it as bad as some folks. What some of you go through is beyond what I can comprehend. I am really sorry for those suffering with these diseases and I am also scared that I may be seeing what's in my future.

So, this is my story. I have a nice family with two elementary age kids. I hope to be able to learn and share what I have learned. I have already learned a lot from this forum.

 

[MapleLeafGirl]

I LOVE your screen name!!

Interesting about the histamine receptors in your gut!

You may already know this, but Advil is generally considered not good for Crohn's patients. I have been using Tylenol instead when I need a pain killer. It doesn't work as well for pain, but it doesn't irritate my tummy either.

 

[Jennjenn]

Welcome

I hope that the new doctor gives you a good treatment and maintenance plan. Also like Kelly mentioned above try to stay away from Advil it can possibly in some provoke a flare up.

 

[crohnicaly stinky]

MapleLeafGirl, Thanks for the screen name compliment. It is usually so hard for me to think of one.

Hello JennJenn, thanks for the welcome.

trust me I will never take another Advil as long as I live. I'm just hoping that that was part of why this flare was so bad and I can recover and resume my normal low level seasonal nagging that I enjoyed for so many years.

I'm looking forward to the new doc. At the old place a week after I saw the doctor I had severe joint pain, all over my body, I had never had this before. So I called and they put me on with the nurse who told me that joint pain and GI issues are never related and she sent me to my family doctor. Can you believe that? It actually got worse from there. lol! Glad to be moving on!

 

[crohnicaly stinky]

Hi Dan

 

[Manzyb]

Hi there! Welcome :0)

I'm glad you are seeing a new doctor. My husband is in the Marines so we move around a lot, and I ended up with a couple of doctors that were just ridiculous. Even with my Crohn's diagnosis the one guy completely wrote me off and didn't believe how sick I was. It's crazy and it makes all the difference to have a good doctor on your side!

I am glad that you are feeling good and I hope you continue to do so!

 

[crohnicaly stinky]

Hi Manzy, Thanks for the welcome. I live not far from that great big five sided office building that our military uses, so I know lots of military families. My kids have friends come and go and get new classmates often. Oh one of them used to fly the Presidents helicoptor, Marine 1? I think they call it. Now he has a horse farm in KY and flies a medical chopper.

I'm hopeful on the new doctor, his website profile is pretty good, but you know what they say about a picture and paragraph. lol!

Take care and good luck to you

 

[crohnicaly stinky]

Saw the new doctor today. He was very patient and answered all of my questions. Nurse was really good too so far. He agreed with the DX of crohn's and concurred that I should go on humira or remecade, my old doctor wanted to put me on humira. But emotionally I can;t seem to swallow what I consider heavy drugs when for so long I controlled it with claritan and also had unwitting success with a low carb diet.

He then offered to put me on lialda and gave some samples to start taking.

I asked if he ever worked with a nutritionists and he said, diet only helps in children and makes no difference in adults. This really didn't sit well with me, partly because diet has affected my disease in the past and people here talk about foods all the time and what they can and cannot eat.

Now I need to spend about 10 hours reading about lialda so I can be comfortable taking it. I'm such a pain in the butt patient, always second guessing my doctor and googling his every suggestion to death. LOL he'll just have to deal with me.

 

[DustyKat]

Now I need to spend about 10 hours reading about lialda so I can be comfortable taking it. I'm such a pain in the butt patient, always second guessing my doctor and googling his every suggestion to death. LOL he'll just have to deal with me.

Good for you for keeping them on their toes!

 

[crohnicaly stinky]

Thanks for the encouragement DustyKat. My new GI doctor who supposedly specializes in crohn's told me diet has no affect on crohn's, except in children. That's hard to swallow, pardon the pun. I'm contacting dieticians now by email to get their opinions and experiences in treating crohn's patients. The doctor is on the board of the local CCFA and is highly regarded. Maybe he is right... but I'm not just going to take his word for it. lol!

 

[Astra]

Hi C S (loving that name!)
and welcome

Read some of your comments with interest, for me, diet doesn't make a lot of difference, I/we will get inflammation whether you're on the best diet in the world! Crohns is an inflammatory bowel disease after all! but during a flare, diet does help to combat the D, and I feel your pain about the old chesnut dx of IBS! had that one for 15 years! I have a thread on IBS - check it out, lots of interesting theories on it.
Hey. glad you've binned the nurse, joint pain and GI not related? WTF?
good luck with the meds, but don't write off the humira, excellent remissions on here with it.
see you around the forum
lotsa luv
Joan xx

 

[crohnicaly stinky]

Joan, Thanks for the encouraging message, I needed it today. I asked the dietician specifically about diets to combat wasting of muscle tissue. This is something I suffered this past month. As I have read more about it, it seems I was killing myself working so hard. I work with my hands and I pushed hard to get some work finished in the middle of the worst part of it. I would work 1/2 hour and then sit 10 minutes and then work again, just being your typical hardhead. Then I got on the pred and I was like popeye after a can of spinach and I really busted out some work. But it seems my body had to go Alferd Packer on itself to keep up. So I need to be more careful and take it easy. My personality is totally wrong for having a chronic disease. lol

I'll update the forum on the dietician stuff and what she says.

Take care, Scott

 

[belle1999]

Hi stinky! I, too, had the IBS diagnosis for many years. It wasn't until last year that things got bad for me and I couldn't stop the D. Landed me in the hospital several times within in a 2 month time frame. Got to know the hospital staff pretty well.
Good luck with everything and I would be interested in what your dietician says.

 

[Astra]

Hiya Scott

Yeah Pred did that to me too, bombing it around like a bee on acid!!
Then BAM!! hit the deck good style, couldn't move a muscle, hurt to even sit down on the toilet, and shocking tendonitis in my elbow too! doc said it was a withdrawal symptom coming off the Pred, but I'm fine now, no joint pains at all, you're right tho, my personality doesn't bode well with this disease, I'm so used to bombing around, I work in a special school with kids with ASD, and it's hard work, they keep you on ya toes!
so take it easy for a bit!
xxx

 

[ataloss]

Hey Scott!!! Welcome aboard. I think the active role you are taking in learning about the disease, the drugs, and treatment is wonderful!

 

[Nyx]

Hi Scott, coming late to your thread for some reason...but welcome!

I have to agree with Joan about diet, it doesn't really affect me either unless I'm in a flare, but when in a flare everything affects me (I'm quite the bitchy person! lol). And pred just makes everyone fly around I think...one of the positive side effects for me anyway.

Keep us posted on your progress, and welcome again

 

[crohnicaly stinky]

Hello to belle1999, ataloss and nyx! Thanks for the welcome and the hello.


Astra my sister in law works with autistic kids. Such a challenging job, I'm not sure what ASD is though? I must say I feel kind of bad proclaiming I don't have the right personality for this disease, because after all who does?
I'm just frustrated that I can't put it behind me and move on with my life, or just ignore the pain and fight through it, like you and many other people.

 

[Dexky]

Hi Scott, they don't get in a hurry to discuss diet for children w/ crohn's either. We sought one on our own after my boy's dx and he told us to eliminate grains of any kind. He also started him on some natural supplements.

Three months into the dx, our GI at Vanderbilt finally set us up w/ a dietician who poo-pooed everything the other dietician told us and simply said to make sure EJ's diet was well-balanced.

Truth is I don't think anyone really knows what to eat until it makes them sick as a dog.
We still do limit EJ's bread intake to a minimum.

I'm beginning to think all GI specs. are just friggin nuts. You've got a disease that causes ulcers in parts of your dig. system. How the xxxx is that not going to be affected by diet. Healthy guts are affected by poor diet decisions.

Mark

 

[crohnicaly stinky]

Dexky,

I understand your frustration and I'm glad your wife is in a position to help. I am convinced that with any sort of serious medical issue you have to become educated or get someone who is to help you.

For me the disease is in the small bowel and the colon, pretty much where they meet. This is a spot where you absorb nutrients. At minimum I would think some vitamin shots would be given to anyone in a flare. I mean it seems like a no brainer. What I want to ask the dietician is what other means is there to get nutrition in your system when your absorption system is inflamed. Seems rational to me. Plus as you suggest, some things must be easier on your system than others when you are inflamed.

So the dietitian I contacted emailed me back and said she doesn't have experience with crohn's but will get me in touch with someone who does. So I'm waiting...

I agree with you guys who say that diet doesn't cause a flare, in my 17 years pre the big flare I eliminated a lot of things from my diet and it never really changed anything. I even quit smoking 9 years ago, really no change to my disease. Still glad I quit though.

One year I got a miniflare up after a cookout and so I eliminated rare steak. I ate leathery steaks for five years before I gave up on that idea! How awful was that?

I posted a thread called elis/act testing. They test for food and other allergies in a unique way. I may try that test one day, it covers a lot of food allergies. I need to be off the roids for a while so it's going to have to wait.

 

[crohnicaly stinky]

Well today I saw my doctor. I have no symptoms except occasional joint pain and he ordered some blood work. It could be as much from being 45 as it could be crohns so who knows. He dropped my lialda from 4 pills a day to 2.

I was disappointed when I asked him about issues regarding short temper, loss of patience, memory loss. I know others here have said they suffer the same way and I have even read some people have it, like I do, as a first symptom to a flare. He responded with never heard of it. Now he has 20 years of experience and serves on the local CCFA chapter. I doubt he has never heard the complaint. Maybe he doesn't believe it is crohns related which is fine, but to claim to have never heard of it. It just makes me a little upset, but hey we all know part of this deal is being your own mechanic right?

So I'll maybe try a psychiatrist, someone suggested googling MS personality and the symptoms are dead on to what I feel. I am going to try krill and tumeric. I took two krill today and I will do those for a while before I add the tumeric.

On a happy note my little company of three years old today hired it's first employee. Great news!! HUGE STRESS!!! I told the doctor that I am just crossing a huge stress threshold and to be ready. He said stress has nothing to do with my disease. What!!??? I said yeah it can't cause it but it can make it worse! He agreed t that. He was really rushed today... bad visit as visits go. But heck with it, I'm feeling great compared to some of you guys.

 

[MapleLeafGirl]

Sorry to hear you had a bad visit. You gotta wonder what goes through these guys heads sometimes, especially that comment about stress. I guess they are human as well though and I try and remember that. Keep us posted about the tumeric and krill oil. I am interested to see if it makes a difference for you.

Congrats on the first employee - what a milestone!

 

[ameslouise]

Hi CS - Sorry for all the "unrelated" symptoms - hope the krill and turmeric help. And it's good, I guess, that you aren't having any of the more usual Crohn's symptoms.

Congrats on the employee - keep the stress at bay!

- Amy

 

[ameslouise]

PS Maybe a Yeungling would help!

 

[Crohn's 35]

Don't you just hate it when you have a bad visit? Maybe sometimes the gi's are over worked and tired and sometimes my doc says something to me like IBS and think ok, that was a brush off to get me outta there... Other times he is good a gold!

Congrats to the employee, and yes try to keep your stress level down, and rest!

 

[crohnicaly stinky]

Thanks MapleLeafgirl and Amy. I am excited to be making the next step in my business, the stress is hopefully not too bad, but I am bracing for it.

Amy, because of all the stuff you are dealing with I feel really silly even complaining one bit. So yes I am well aware of how good I have it. And a cold Yeungling sounds great!. I've been drinking a Mexican brew called Modello lately, pretty good stuff.

 

[crohnicaly stinky]

Don't you just hate it when you have a bad visit? Maybe sometimes the gi's are over worked and tired and sometimes my doc says something to me like IBS and think ok, that was a brush off to get me outta there... Other times he is good a gold!

Congrats to the employee, and yes try to keep your stress level down, and rest!

Actually as I sat in the waiting room I thought to myself how I really feel fine and things are under control and I know there is probably someone out there in a major flare, on a three week wait to see him and I would change places with them in a heart beat. I felt a little bad taking a slot in his day in that way. But hey I was there and so I figured, well I'm going to get a bill may as well discuss a few things with him. I only got half way down the list, he was obviously busy, so I just gave up and said see ya later. No hard feeling really from me, I'm doing ok.

 

[Dexky]

On a happy note my little company of three years old today hired it's first employee. Great news!! HUGE STRESS!!! I told the doctor that I am just crossing a huge stress threshold and to be ready. He said stress has nothing to do with my disease. What!!??? I said yeah it can't cause it but it can make it worse! He agreed t that. He was really rushed today... bad visit as visits go. But heck with it, I'm feeling great compared to some of you guys.

So you're the sob who made you climb inside of those tanks with a chem suit on when it was 100 degrees outside!!! I hope your new employee is as tough as you Scott!!

 

[Astra]

Hiya Scott

really glad you're ok! sorry about the visit to docs tho, sometimes they just can't be arsed! (hey Im not generalising!!)
but good luck with new employee!
stay well!
xxx

 

[crohnicaly stinky]

So you're the sob who made you climb inside of those tanks with a chem suit on when it was 100 degrees outside!!! I hope your new employee is as tough as you Scott!!

lol! You know in between stints in the field I sold jobs and I always told guys I'd never sell a job I wouldn't do myself. Problem is I would do a lot of things a lot of guys wouldn't, but when your standing there in a suit and tie, and you the "bleepin salesman" they never believe you. But it's not because I'm better, I'm just old school where your goal is to be "strong like ox, dumb like bull and smell like goat". But yeah I put myself in that mess.

Actually I have crohns to thank for wearing the respirator and the tyvek suit against the asbestos on that job. If there is one thing I learned from that flare it's when your health is really bad life just stinks, of course my new careful self promptly went and got gunk in my eye for not wearing safety glasses. lol, first time in 25 years. oh well. enough rambling.